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Desparate And Itching Again


skyyblues

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skyyblues Newbie

Hello - I am desparate and hoping to find answers.....

Symptoms: Dishydrotic Exzema - Mainly hands but also arms, legs, chest, and recently face.

Diarrhea - 10 - 15min after eating - sometimes stabbing pains

Arthritis in knee

Leg cramps

Throat closes - Occaisonally happens when swallowing (unknown trigger)

Steroids: Prednisone - Nov and Dec 08 / Apr 09

Kenalog - Shots 2x in Jan 09

Medications: Omeprazole 20mg 2x day - Indestion 3/09

Simvastin 40 mg 1 day - Cholestoral 3/09

Ranitidine 150mg 2x day - trying to reduce acid in body to help exzema

Fexofenadine 180mg 2x day - allergy symptoms exzema

Singular 10mg 1 day - allergy symptoms exzema

Hydroxyzine 10mg up to 3 at bedtime - for severe itching at night to sleep

Benadryl - itching

I had some allergies as a child. Exzema on back of thighs never diagnosed cleared up. 2 1/2 yrs ago while changing jobs had new carpet and linoleum installed at which time I started to break out on legs and hands, spreading to arms. Kept seeing dr's none of which had any clue. June 07 had allergy tests which showed cabbage, formaldehyde, and several other perservatives. Got allergy somewhat under control in 08 until I had a root canal in Sept. Started to break out again. Allergy doc put me on prednisone(hate it). Had severe breakout and staph infection on hand in Jan. At that time they did a biopsy of my hand and I just inquired and it was not DH. Had just finished prednisone so they shot me with kenalog twice within a week and a half. Hands got somewhat better. March thighs broke out, hands worse, arms and chest also broke out. Saw my GP for regular check up and when he saw me he asked if anyone ever tested for Celiac Sprue. I said no, so he ordered blood tests. I did research. Wow could this be it??? Blood tests came back negative, but told that can happen (would steroids affect test results?). Doc said go ahead and try gluten free. Stomach is better than it has ever been!! Yeah. Was out of town 1st week of gluten free and arms and legs started to fade and couldn't see new blisters on hands!! On Thurs nite eye itching. Friday still itching starts swelling.... Friday nite when lips started to numb went to ER. Prednisone and Benadryl again... I am weaning off prednisone as quickly as possible and doc has sent me for consult with Gastro doc to do enoscopy for biopsy. I know I will have to go back to eating "poison" for correct testing. Thought of running to bathroom with pain not pleasant but I am willing to do anything at this point.

I am sorry for such a long post but am feeling at my wits end. Doctors call me a freak, friends and family are somewhat supportive but think I am just going to get a shot and be fine. My hands are cycling horribly, my thighs are broke out a little and I just want to cry at my own private pity party..... :( ......Any suggestions or help would be greatly appreciated.

Becky - Racine, WI


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ang1e0251 Contributor

You are Not a freak. You are sick. People, dr's included, are judgemental. Gluten can cause all the symptoms you described. It might not be your only problem but your dietary response is dramatic. It is affecting you.

Keep us posted. No one else might understand but we do.

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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